rare connect
For those living with Erdheim-Chester Disease (ECD), the path can often feel overwhelming and isolating. It’s not just the rarity of the disease that makes the journey difficult—it’s the questions, the uncertainties, the need for answers, and the deep desire to simply connect with someone who understands. That’s why the ECD Global Alliance’s (ECDGA) Annual Patient & Family Gathering is so much more than a conference. It is a lifeline.
Each year, this unique event brings together patients, caregivers, families, clinicians, and researchers from around the world for a one-day experience that centers not just on education—but on community, connection, and hope. This year, the Gathering will take place on May 26, 2025, in the heart of Barcelona, Spain, and promises to be a day of inspiration and empowerment.
More Than Education—It’s Belonging
At its core, the Gathering is about making sure no one faces ECD alone. From its early beginnings in 2008, when three caregivers—Carol, Kathy, and RuthAnn—found each other online in a moment of need, the ECDGA has always been rooted in connection. What began as a single online chat has grown into a global alliance supporting over 600 families in more than 60 countries.
The Gathering is a continuation of that spirit. It’s a chance to sit beside someone who understands what a diagnosis day felt like. It’s an opportunity to ask a question you’ve never had the chance to voice, and to hear an answer from a medical professional who genuinely cares. It’s a room full of people who “get it.”
The Power of Shared Stories
Whether you’re newly diagnosed or have been living with ECD for years, there is power in hearing someone else’s story. Stories of resilience. Stories of navigating the medical system. Stories of finding light in dark moments. These shared experiences don’t just build friendships—they build strength.
Caregivers often tell us how comforting it is to finally talk to someone who knows what it’s like to feel helpless and hopeful at the same time. Patients speak of the emotional relief in hearing another person describe symptoms they’ve struggled to articulate. These connections are not just helpful—they’re healing.
Knowledge Is Empowerment
While community is the heart of the event, information is its backbone. The Gathering provides attendees with access to some of the world’s leading ECD experts. Clinicians and researchers will share updates on the latest in diagnosis, treatment strategies, and research developments. Attendees can ask questions directly, gain insights into managing symptoms, and better understand the scientific landscape of ECD.
This accessibility to knowledge is invaluable. In a disease where many patients face delays in diagnosis and uncertainty around care, information can empower individuals to advocate for themselves and their loved ones.
A Bridge to the Future
The 2025 Gathering in Barcelona offers more than just a chance to meet face-to-face—it offers the promise of a stronger, more connected future. By coming together, patients and families help inform the medical community. Their voices, their feedback, and their lived experiences shape the way research is conducted and how care is delivered.
The day after the Gathering, the ECDGA Medical Symposium will bring together specialists from across the globe. Many of these medical professionals will attend both events, reinforcing a collaborative atmosphere where science and humanity meet. This synergy fuels progress and reminds us that breakthroughs are possible when we work together.
Join Us in Barcelona
Whether you’re a patient, a family member, or a caregiver, the ECDGA Patient & Family Gathering is a space created for you. A space where questions are welcomed, stories are honored, and connections are made.
As we prepare to gather in Barcelona on May 26, we invite you to consider attending—not just for what you will learn, but for what you will feel. Hope. Understanding. Belonging. These are the gifts you’ll find at the Gathering. And they are the reasons this event is so much more than just a conference.
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
